Spider wrote:Absolutly Correct, Football (soccer ) for 30 years non stop. Professional / semi professional / local leagues.

See, this isn't coincidental. Obviously there's something to it. Maybe can give some people here peace of mind that maybe, just maybe, we've burned out our adrenal system / hormones / steroids. So maybe you don't need to worry about more serious conditions. When these burn out, pretty much everything goes off kilter and it would make sense that bodywide dysfunctions would manifest. I realize I've tossed around tons of ideas for causes of BFS, and I seem "convinced" of each one, but this is a process of investigation, so that's how it goes. There is a method to my madness, and each iteration of "being convinced" either eliminates the previous items, or gives them a new perspective. I suppose they're all still on the table, but at the moment, I'm learning about this one.

There are very few things which are certain with BFS, so you have to look at the anomalies. The consistent anomalies. If everyone here were able to have the same tests done, it would be a lot easier. I wish we could find a doctor who would be willing, for a nominal fee, to run bloodwork. Or at the very least order it, so we could start comparing levels. We might find some consistencies for once. Whether it be viral activation panels, or something related to this. Cortisol testing (24 hour version, early morning fasting version), adrenal testing, DHEA testing, Hormone panels, etc. Without that, doctors only run the basics, then send us home as hypochondriacs. If doctors had the mentality to actually try and solve mysteries, I dare say we'd already be tested for a lot of the outlying possibilities and maybe have some answers. As it stands, only a handful of us have, and that isn't enough.

No matter what anyone says however, its no coincidence that so many people here are long distance runners and bikers. Fitness enthusiasts and the like. Seems every person I interact with on here is either doing Boot Camp at 5am every morning, or they just ran their 26th mile for the day. Either that or they're avid participants on bodybuilding forums, or have a history of anabolic steroid use, etc. Im sorry but that is just *too* coincidental. I have spent the last 15 years participating on online forums and run one myself, and you simply do not see that stuff so frequently on some random health web site.

I agree with you, and I sayed it for a long time, I even created a post searching for "the others", those won't don't exercise much or at all. But at this moment you came and hijacked my topic, explaining how it was bad to not exercise. I didn't say it was good practice, I was just searching for other people who don't exercise, like me, and who have BFS symptoms. I hope your vision is cleaner now and maybe I will try to bring this topic back to life without fearing you ruin it again.

The adrenals may get over-taxed, depleted, or start to not function properly, but in a vast majority of cases this would only be temporary. Never underestimate the ability of the body to heal itself. What is missing in most cases is that 1.) most people/doctors never realize the adrenals are in need in the first place and 2.) even if they are realized to need care the doctors only have surgery or drugs at their disposal and the adrenals need neither. Everything that happens in the body happens for a reason. Every symptom manifests to counter-balance something else that is going on. Sometimes you can have a complex chain of events, each causing something else to react and fall out of balance. It all happens for a reason though. The adrenals are likely just another symptom of the imbalances that cause BFS in the larger picture.

If your mind is your own worst enemy, why not make friends with it and turn it into your greatest ally? Mental discipline is achievable and there is help available. Learn what works for you, practice, and change your life for the better.

I agree with you, and I sayed it for a long time, I even created a post searching for "the others", those won't don't exercise much or at all. But at this moment you came and hijacked my topic, explaining how it was bad to not exercise. I didn't say it was good practice, I was just searching for other people who don't exercise, like me, and who have BFS symptoms. I hope your vision is cleaner now and maybe I will try to bring this topic back to life without fearing you ruin it again.

I don't think "adrenal fatigue" only happens due to over-excercise. I suspect it could also happen if you have an erratic sleep schedule, work too many hours, overuse stimulants, indulge in thrill seeking activities on frequent basis, or just simply under non-stop stress.

do you fall into any of those categories christo?

"Health is a state of complete physical, mental and social well-being, and not merely the absence of disease or infirmity." ~World Health Organization, 1948

A non-exercise group is definitely present on this board, but I would expect them to have significantly worse symptoms, if this is related to HPA Axis Dysfunction or Adrenal Insufficiency.

Why? Because such individuals have zero outlet for the anxiety, emotional trauma and stress they experience. That inflammation will continue to build, continue to put strain on the adrenals, and continue to pump cortisol and adrenaline into their veins, with no way to release it. Add lack of sleep, hours in front of the computer, lack of sunlight, the intake of coffee or energy drinks, and you have a recipe for disaster. Nothing calms inflammation and releases stress better than moderate, physical activity.

I didn't get BFS from exercise, but from a long process of traumatic emotional events, lack of sleep, bad food intake, poisonous medicines, self induced damage, vaccines, antibiotics, lack of electrolytes, abnormally low cholesterol, viral infections, and some significant exercise just to "run me down" even more.

As far as your thread goes, it sounded like you were trying to prove that you guys are different than all the exercise enthusiasts here. I only chimed in to encourage people to *begin* moderate exercise, because it *will* help their symptoms. I don't think the celebration of a sedentary lifestyle of complete inactivity is a good thing. If HPA Axis Dysfunction is related to BFS, then you guys aren't different at all. It's only when exercise branches off to putting strain on the body, tiring it out, and wearing it down, that it becomes bad for people with BFS.

As far as my "vision" goes, I still don't know what causes BFS. So my vision has remained the same from the beginning. Im still searching, and enjoying every minute of the learning process.

BFSBurger wrote:Yeah it sounds complicated doesn't it? Well did you expect anything less for a possible diagnosis for BFS? I didn't.

Would like to encourage everyone to copy and paste this into google and do some reading. Don't worry, its safe, and choc full of reasons why you should modify your lifestyle to reduce stress. You wont get any health anxiety from reading it. I am very interested in what people find, and what they think about the list of symptoms associated with it.

Interesting read . As I said most of the medical stuff I can't understand but that is another fine example of what this *beep* could be .Although I have only had this a short while and I think it's quite mild compared to some people on here .I really think that something is "broke" or "worn out" in our body.

I definitely believe that something is greatly off kilter in the hypothalmus with many cases of BFS, especially mine. My BFS is the result of decades of extreme stress, completely messed up sleep cycles, years of extreme/intense exercise, years of herbal supplement use, bad eating habits, and just general inconsistency with my lifestyle...complete lack of routines and whatnot. The sleeping pills that finally set off my BFS were just the tip of the iceburg. It had been brewing for a long time.

Besides the bodywide twitching, I've dealt with really messed up sleep since this started which has admittedly gotten better in the past month or two. I had extreme food intolerances which also have gotten somewhat better recently as well.

Like Burger, I wonder how doctors can simply dismiss us as hypochondriacs when there is clearly something malfunctioning somewhere. You don't just suddenly start twitching everywhere 24/7 out of nowhere...but the body does heal itself slowly. Slightly over one year in, I'm seeing a noticeable difference. Amazing what the body can do on its own either for the better or worse.

My ability to get deep sleep is nearly non-existant and I definitely have chronic fatigue every day, but even that has gotten somewhat better recently. I used to jerk around non-stop all night long for nights on end and get no sleep (again probable hypothalmic dysfunction) and most nights nowadays I'll noticeably jerk maybe 2 or 3 times before I fall asleep.

If anything, BFS has forced me to really take a look at my priorities and lifestyle and constantly re-examine them. I now follow routines, try to stick to a set bedtime, and have been moving more and more to a paleo diet. Last year I couldn't eat any meat, but now I can eat beef, fish, lamb, and I'll be adding chicken back into the mix soon. I don't know what it is about the paleo diet, but it seems to be helping somewhat in all ways.

So if it's hypothalmic dysfunction, then hopefully that'll sort itself out over time as long as we take really good care of our bodies.

Been on the BFS journey since 6/26/12...

Twitch way do I go from here?

BFS does get better with time. Almost two years in and able to do almost everything I could do before I had this condition. Still twitching away of course...

This HPA Axis Dysfunction theory is really sticking with me as I think more and more about how my BFS began. There is a structure in the brain called the sensory homunculus (spelling?) which basically has a one-to-one correspondence with neuromuscular sensation. For instance, if an electrode were placed in the region of the sensory homunculus responsible for sensation in your feet, you would feel something in your feet when that region of the brain were activated.

So I'm wondering...might BFS originate entirely in the brain around HPA Axis Dysfunction and might the brain be sending signals to the muscles via the sensory homunculus telling them to contract? Might the "spreading" of our twitching be entirely due to the dysfunction spreading across the different regions of this part of the brain?

I've been thinking a lot about this lately but I don't know enough about neurology to really get anywhere useful with this theory. Thoughts?

Been on the BFS journey since 6/26/12...

Twitch way do I go from here?

BFS does get better with time. Almost two years in and able to do almost everything I could do before I had this condition. Still twitching away of course...

I am all over this theory lately, but for the first time, I have been too busy to research it. I fully expect to hit a dead end (LOL) but at the same time, this is the first time people's bloodwork has actually matched HPA Dysfunction. That is something that can't be said about any of the other theories I have floated. The beauty of the "dysfunction" is that it can be in either direction. DHEA can be sky high, or too low. Testosterone usually low. Cortisol can be too high, or too low. Dysfunction leaves it wide open. But as I mentioned to Chrissi on Skype, I still have to somehow correlate twitching with HPA Dysfunction. Or maybe not. You can google adrenal fatigue and see plenty of people reporting systemwide twitching. Your theory may be valid, but I know nothing about it just yet. As a side note: Even if this is the true cause of BFS, the exercise/stress management/diet change theories still fit perfectly. Science has proven that all three of these play significant roles in the hormone/steroid activities in the body. So it all really does fit perfectly.

Burger, I don't think you are going to hit a dead end with this one at all. I don't think the HPA theory explains everything, but I would bet money that it explains at least 70% of what's going on with us, maybe more.

I had a conversation with a neurologist in New York a few months ago about what the latest and greatest BFS discoveries have been and I am going to directly quote what he said (he works in neuro-imaging):

"I think most neurologists feel that BFS is a way your muscles are. There is some evidence that the T channels that carry calcium away from the sarcoplasmic reticulum in the muscle fibers are anatomically different in your muscle, hence the repeated fasciculations. So the treatment is only symptomatic, because you are not going to change your muscular anatomy."

Now I don't know what this has to do with the HPA axis, but let's suppose that our muscles are pre-wired for extra twitching via anatomically distinct T channels. Then suppose our adrenal glands get overloaded...in a person with normally constructed T-channels, perhaps their twitching wouldn't be as bad as ours or would go away quicker, but people like us may just be wired differently, and I mean in every way, including our personalities.

Another neurologist, Jack Scariano Jr., wrote, "This is unusual because [BFS] is a acquired muscle abnormality, as opposed to a congenital type of muscle problem in which the muscles fire at a very low threashold. Cells in our body have membraines which maintain a electical charge across it. the charge is maintanined by the movement of sodium and potassium across the membrane. These elements mover through channels in the membrane which let the sodium in and out in microseconds. when ths sodium is let in the cell has a discharge which in muscle makes a contraction. Now when you have benign fasiculations, these cells fire at much higher potential which leads to the fasiculation. A simple explanation: lets say that a normal muscle has 100 sodium molecules on the outside. when 50 are let inside. the muscle contracts. In benigh fasiculation, the muscles fire at say 10 sodium in, the muscle fires early and more frequently. Anxiety also cases chemical changes which make the muscles fire more frequently without intendent movement. So the facsulations get worst."

Notice how Dr. Scariano mentions that anxiety causes "chemical changes." I am wondering if these chemical changes he refers to are a confluence of HPA axis dysfunction and anatomically distinct T-channels in the muscles. Maybe anxiety over time even has the ability to alter the anatomy of the T-channels plus much of that could be genetic as well...who knows? It's a chicken and egg question for me, but the neuro I spoke to seems to be leaning toward a genetic predisposition toward altered T-channel anatomy (which might explain why BFS runs in families).

What is especially interesting about this brain structure is that it plays a HUGE role in sensation and perception. People who've lost their arms or other limbs in accidents can still "feel" their presence thanks to this body map. This phenomenon is called "phantom limbs" and a prominent neurologist by the name of Dr. Ramachandran wrote a book on it about a decade ago called "Phantoms in the Brain." A must read. I loved it.

So my theory right now is that basically BFS is result of (A) structurally altered T-channels in the muscles, (B) generalized anxiety causing HPA-axis dysfunction and thus chemically altering muscle function much worse in people who have these altered T-channels, and (C) perhaps some cortical dysfunction via the sensory homunculus.

I would be very interested to have an experiment run where there is a non BFS control group and another group of very heavy BFS twitchers and then have both of them go in for functional magnetic resonance imaging (fMRI) scans to see which areas of the brain have altered blood flow during twitching episodes compared to controls. That may explain the cortical component to this (lol, it's not ALL in your mind, but you know what I'm saying, right?)

If this is truly the case, I am afraid that may never be a cure for BFS, but there should be a way to treat the symptoms effectively by targeting the HPA-axis dysfunction via stress management and possibly medication. Making things less chaotic, you know...

Well, what do you think?

Been on the BFS journey since 6/26/12...

Twitch way do I go from here?

BFS does get better with time. Almost two years in and able to do almost everything I could do before I had this condition. Still twitching away of course...

When you start to research cortisol, adrenaline, and other hormones and their effect on muscle firing, you'll see a direct correlation there too. And the HPA Axis directly affects hormone and steroid levels. Everything is tied in. Just google this term and you'll be swamped with results: adrenal fatigue muscle twitching

HPA Axis Dysfunction is implicated in Chronic Fatigue Syndrome and Fibromyalgia as well. So its blamed for a lot of unrelated and very unique disorders. I guess how it plays out in each person can be different. It may be a lot like mitochondrial dysfunction. That's a very initial precursor to tons of "down the stream" disorders. Disorders that take on a life of their own. Technically mitochodnrial damage could be the culprit, but by the time you end up with "X" disease, you barely remember that the problem is in your mitochondria. It may be the same with HPA Dysfunction. It may be a "first level" trigger that .... since it has such a widespread effect on every process in the body ... leads to numerous eventual disorders.

However - with the number of worry warts and extreme athletes here, it is almost a no brainer what is going on. Stress causes muscle twitching. We already know that. Excessive muscle working causes muscle twitching. In everyone. So here we have a bunch of extreme athletes and stressed out people .... who twitch like crazy. Something "flipped the switch on" for us, and it hasn't turned off.

I think doctors looking at the whole potassium / calcium thing are looking at it very simplistically, but I get where they're coming from. I think if HPA is part of this, then it would be the hormone and steroid levels which agitate things for us. This is the very reason why anything affecting hormone and steroid levels (even food) can trigger symptoms. I am speaking before I've had a chance to research, so I need to get going on that. Apologies for the delay. I have friends coming into town from California this week so I'll try to start reading more after.

BFSBurger wrote:Yeah ... its clear that medicine has a long way to go before they discover all the mysteries of the body.

Obviously something "Broke" in us at some point. Its just so strange that suddenly, on a dime, everything changes. That is weird. Its a lot more reminiscent of an infection in that regard. I dont usually hear of the body just breaking like that. I suppose there is a building up period but its still weird ... how abrupt it is. Who knows...

Its also strange to me that there seems to be no testing, or bloodwork or diagnostic measures for adrenal function outside of full blown disease. (addisons, etc). That whole world of the adrenal realm is therefore categorized as hocus pocus by doctors. A typical practice for doctors. That which they don't have sufficient information on, doesn't exist ...

No matter what anyone says however, its no coincidence that so many people here are long distance runners and bikers. Fitness enthusiasts and the like. Seems every person I interact with on here is either doing Boot Camp at 5am every morning, or they just ran their 26th mile for the day. Either that or they're avid participants on bodybuilding forums, or have a history of anabolic steroid use, etc. Im sorry but that is just *too* coincidental. I have spent the last 15 years participating on online forums and run one myself, and you simply do not see that stuff so frequently on some random health web site.

So yeah, there are certain things about the people on this forum that you simply don't see on other health forums. Certain glaringly obvious differences. That is one of them. The other is how many folks are speaking another language. For a forum this small, so many people being from northern europe, france, netherlands, etc .... that isn't common. Nobody agrees with me on this but I know I'm right. I don't know what could possibly be the significance of that. Only thing my brain goes towards is Lyme disease which is common in those areas, and northern USA. Aside from that, maybe europeans are high stress? I know Germans are (wink wink Chrissi!! LOL) Maybe its all those darn bikes in those european cities. Maybe people are stressed and exercising too much also

Anyways ... I heard Dr. Hyman is a virgin. True story?

-Burger-

To me, it's not all that strange that these things happen all at once...kind of like a dam breaking. With seizure disorders, there is an individual threshold. Everyone's is different based upon several factors. One minute you have never had a seizure...totally seizure free...the next you are in a seizure...full tonic clonic variety. There is usually a precipitating event or stressor that pushes someone past their threshold. For instance, in infants/young children it might be a fever of 106. But, something happens then boom.

I suspect most people have a threshold for BFS. Since, most humans have fasiculations at some point in their lives...it appears most human beings are capable of twitching. I was always a twitcher. But, they came and went...maybe a couple a month. I had times when they might come for an hour or two then go away. Then I get a new promotion with more responsibility, built a new home, have a health scare which triggered old anxiety stuff in me. I stress...stop eating well, start losing weight, lose sleep which strains relationships at home and work...more stress. The dam broke...threshold met...and off to the races. I start twitching everywhere.

To me, this is a classic threshold phenomenon. Those of us with anxiety disorders just happened to tax our systems in various stress related ways. With those here without anxiety, I suspect it was some other stressor that pushed them past their threshold.

BFSBurger wrote:Yeah ... its clear that medicine has a long way to go before they discover all the mysteries of the body.

Obviously something "Broke" in us at some point. Its just so strange that suddenly, on a dime, everything changes. That is weird. Its a lot more reminiscent of an infection in that regard. I dont usually hear of the body just breaking like that. I suppose there is a building up period but its still weird ... how abrupt it is. Who knows...

Its also strange to me that there seems to be no testing, or bloodwork or diagnostic measures for adrenal function outside of full blown disease. (addisons, etc). That whole world of the adrenal realm is therefore categorized as hocus pocus by doctors. A typical practice for doctors. That which they don't have sufficient information on, doesn't exist ...

No matter what anyone says however, its no coincidence that so many people here are long distance runners and bikers. Fitness enthusiasts and the like. Seems every person I interact with on here is either doing Boot Camp at 5am every morning, or they just ran their 26th mile for the day. Either that or they're avid participants on bodybuilding forums, or have a history of anabolic steroid use, etc. Im sorry but that is just *too* coincidental. I have spent the last 15 years participating on online forums and run one myself, and you simply do not see that stuff so frequently on some random health web site.

So yeah, there are certain things about the people on this forum that you simply don't see on other health forums. Certain glaringly obvious differences. That is one of them. The other is how many folks are speaking another language. For a forum this small, so many people being from northern europe, france, netherlands, etc .... that isn't common. Nobody agrees with me on this but I know I'm right. I don't know what could possibly be the significance of that. Only thing my brain goes towards is Lyme disease which is common in those areas, and northern USA. Aside from that, maybe europeans are high stress? I know Germans are (wink wink Chrissi!! LOL) Maybe its all those darn bikes in those european cities. Maybe people are stressed and exercising too much also

Anyways ... I heard Dr. Hyman is a virgin. True story?

-Burger-

To me, it's not all that strange that these things happen all at once...kind of like a dam breaking. With seizure disorders, there is an individual threshold. Everyone's is different based upon several factors. One minute you have never had a seizure...totally seizure free...the next you are in a seizure...full tonic clonic variety. There is usually a precipitating event or stressor that pushes someone past their threshold. For instance, in infants/young children it might be a fever of 106. But, something happens then boom.

I suspect most people have a threshold for BFS. Since, most humans have fasiculations at some point in their lives...it appears most human beings are capable of twitching. I was always a twitcher. But, they came and went...maybe a couple a month. I had times when they might come for an hour or two then go away. Then I get a new promotion with more responsibility, built a new home, have a health scare which triggered old anxiety stuff in me. I stress...stop eating well, start losing weight, lose sleep which strains relationships at home and work...more stress. The dam broke...threshold met...and off to the races. I start twitching everywhere.

To me, this is a classic threshold phenomenon. Those of us with anxiety disorders just happened to tax our systems in various stress related ways. With those here without anxiety, I suspect it was some other stressor that pushed them past their threshold.

BINGO! This is what a psychiatrist who prescribed me Lamictal explained. Exactly in these words too. BFS is a thresh-hold disorder and everyone has the potential for "BFS" to an extent...it's just a question of how revved up our nervous system may be. And genetic factors, etc. The non-stop twitching becomes our new normal. This is why once the horses have been let out of the gate, the only option is symptom management and anxiety management. Such a great post. Thanks.

Been on the BFS journey since 6/26/12...

Twitch way do I go from here?

BFS does get better with time. Almost two years in and able to do almost everything I could do before I had this condition. Still twitching away of course...

seventhcandle wrote:BINGO! This is what a psychiatrist who prescribed me Lamictal explained. Exactly in these words too. BFS is a thresh-hold disorder and everyone has the potential for "BFS" to an extent...it's just a question of how revved up our nervous system may be. And genetic factors, etc. The non-stop twitching becomes our new normal. This is why once the horses have been let out of the gate, the only option is symptom management and anxiety management. Such a great post. Thanks.

I don't believe BFS is irreversible. I was able to get the horses back in the gate with the right help.

If your mind is your own worst enemy, why not make friends with it and turn it into your greatest ally? Mental discipline is achievable and there is help available. Learn what works for you, practice, and change your life for the better.